The pediatric nephrologist met with me and E today. She is fairly certain that he has multicystic dysplastic kidney. It turns out that this is a better diagnosis compared to polycystic kidney disease, which has more complications. (So let's count all the things E's kidney has been so far: horseshoe kidney, polycystic kidney, and now multicystic dysplastic kidney.) Still, I think this final diagnosis is most likely to be correct. The doctor is a specialist and has seen these things so many times that I trust her. We still need to have some tests done over the next few weeks to be totally sure. The link above talks about the tests he will have done for his kidney. I am not sure if we will opt to have it taken out, or just watch it until it dissolves. Either way, I am anxious to have answers.
Fortunately, all the tests will be finished by the time he is supposed to have cleft lip surgery. I do not like having things up in the air. I am looking forward to having a specific diagnosis and a plan of attack. Then we can focus on the cleft surgeries and getting E recovered. A bright spot: he was weighed today and has passed the 9 pound mark. (This is comforting considering that he needs to weigh at least 10 pounds to have his first cleft surgery in March.)
A side note: I was heartened today talking to Dr. Hsieh (the pediatric nephrologist) when she commended my willingness to pump and give E breastmilk. She says that it is the best thing for his kidneys since they are somewhat compromised. It turns out that he would need special formula if I decided to stop pumping. I have to admit that I have had a hard couple of days with the pumping. It just takes so damn long. Just in case you are wondering, do not add up the number of minutes per day you pump if you are ever in my situation. The answer is 2.5 hours. Every day. Blech. But these are the things we do for our children, no?
7 comments:
Kendahl, you are such a good momma. And you are pumping for such good reasons. And congratulations! I can't believe you have him up to 9 lbs already! Way to go!!!
You and E are doing so awesome. You really are giving him the very best and look at him grow! You can just tell how much you love him.
You are in my thoughts and certainly a warrior of a woman.
I am so proud of you K! I haven't been on-line to chk. on you and E. He is beautiful! AND he is the luckiest baby boy to have you as his Mommy! I'm so not surprised at your commitment and wisdom in doing what is best for him.
You and E are in my prayers.
Love you mucho! Kristi
I'm impressed. Good Jaerb! We'll celebrate with 'death by chocolate' when the time is right
R's Dad
Dude, I'm with you on the pumping thing! When Abram was 6 weeks old, he had some issues and I had to nurse him for 5 minutes every 30 minutes...it was horrible!...and I only had to do it for a week! I can barely imagine your situation...oh, man.
Good luck. Still, it sounds like all your hard work is paying off:)
wow, so many friends :) I really needed this today.
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